Merry Christmas!

Merry Christmas and the Happiest of New Years!!!!

Well, It’s Been a While…

Well, it's been quite a long time since I have posted anything written to the blog and I'm sorry that it has taken so much time for me to get my thoughts together to post again. Some incredible things have taken place since we returned from Orlando this past October, and in addition to those incredible things, I was challenged to seek out my motives for writing all that I have, into the blog. The challenge to do so was from one of the purest hearts and someone whom I respect deeply, so I know the intent was not to cause me any discouragement whatsoever, but to learn that much more about myself. Since this disease kicked into gear in 2006, I lost a lot of what I perceived to be my physical identity;

I lost my job

I lost my career

we lost our home

I lost my drivers license

I lost my truck

I lost my independance, to a significant extent.

…and without my license and my truck, I quickly lost touch with the majority of my friends. By no means do I think that any of my friends did not, or do not want to see me anymore, but the convenience of being able to step into my truck and drive to see someone was removed and with it a major motivating factor from the bulk of my relationships. Under the circumstances, it truly is nobody's fault; no one gave me the disease and no one made me get sick. Pretty much all of my friends either have jobs, families, school or all three and I know that it is very difficult to break routines just to go catch up with somebody, regardless of who they are. There's only one reason that I am sharing all of this with you, and that is because I realized that I've been using the blog as that friend, that embodiment of all of those different friendships combined into a computer generated pen pal of sorts. I don't think that that is bad, in another itself, as a matter of fact, I think that it has been very helpful to me with great regularity. The problem is, well... that I am feeling tremendously better and I don't want to be talking just to a computer screen, I would like to be talking to actual people, in person. We all have those close friends that we feel that we can share our hearts, our minds and our souls with, and that's a very good thing because you know who you're talking to, that you're able to verify that what they're hearing is in fact what you are saying, and more importantly what you're trying to communicate. When I share here on the blog, I don't know who reads what, and as such, I have to remain guarded and constantly edit every word and punctuation point before I hit the publish button. So, there you go. That's pretty much it, in its most brief form. I still haven't figured out how to move forward with the blog in a way that will satisfy me, but I do know that I want to use the blog in a better that will keep my family and friends up to date on what's going on with me, at least all the things that are appropriate for me to share.

Now, as I mentioned above, I am feeling tremendously better since returning from Orlando, I would even go as far as saying that the trip to the Periodic Paralysis Organization’s Conference in Orlando this last October, was life-changing for me and for my family. Before going to Orlando, I would have attacks every day or I would have one very large attack that would last a matter of one to two weeks, with several smaller crashes within those 7 to 14 days and it would typically take me hours to recover from the attack or the crash, to the point that I could communicate effectively. While at the conference, I went into an attack (no surprise) and one of my pen pals from the HK PP listserv, who I had only known in person for a matter of hours, came out to see if she could help CC in caring for me and helping me recover. When she saw that I was taking liquid potassium combined with Apple juice, she explained to us that the Apple juice would actually become a vehicle for the potassium to not be absorbed, but instead, just be flushed out of my system like any other liquid. Her explanation opened our eyes to understanding why it would take me so very long to come around after an attack; because the potassium was being prevented from absorbing due to the juice. CC told me that she left to get her purse and when she came back, she brought with her a different type of potassium, known as a “fizzy”by those who use it. This type of potassium is effervescent it is very quickly absorbed into the system. I actually came around within minutes! CC called our Dr. back in California, that afternoon, and asked for a prescription change from the liquid potassium to the fizzy tablets, and my life has not been the same since, praise God! There were other very significant experiences and understandings from our trip but I don't think any of them were as significant as the change in potassium delivery. God has not removed the disease from my body, but he has blessed me with friends and family who continually fight alongside me for a much better quality of life. How could anyone not see me as extremely blessed? I know I am not alone, I have a better handle on fighting the disease, I have more energy and I feel like I am living life now, more than I have in the last three years. God is good.

Before I close out, I would like to also share one more thing, and that is that I am now doing a one hour show on media technologies in the church, on an intranet Christian radio station on the Creator Leadership Network click here. My official Showtime is on Mondays at 4 PM. Unofficially, the show will run at various times during the week until those other times get filled by other hosts. Theoretically, the show is currently running at:

Mon-Sun at 4am and 4pm

Tuesday and Saturday @ 8pm,

Wednesday and Sunday @8am,

The last show that I recorded will be the first of a three-part series, which I think will probably begin running one week from this Monday, December 14... but don't quote me on that. It's entitled “Communication, Integration and Preferences”. The first hour’s talk will cover 2 different relevant topics that generally face the sound-tech team members, as well as, Worship Leaders and Ministers of Music, and they are:

“Church in a box?” and “How to communicate with your tech during a service”

The following two shows in the series will address “Integrating Sound Reinforcement with Organs and keyboards”, a response to an Email Regarding “Mic Preferences and Placements”, and also “Monitor Mix Issues”.

If you click on the Reverence Channel link, it will open up a small window with a media player in it. If you click on programs, you'll be able to see all of the different folks who are on the station as well (Vern Sanders, Doug Lawrence, Steve Amerson and Mark Lawson, to name a few). For the first time in years, I'm truly excited to be given the opportunity to serve in a manner that allows me to share my heart and my experiences in a new way. This was, and would have continued to be, totally impossible prior to our trip to Orlando and it should be duly noted that the offer did not come through until after some of my strength and confidence had returned, once we had returned from Orlando. I don't believe in coincidences but I do believe in Him and His timing, period.

If you wish to, check out the site and check out the show and then shoot me an e-mail sharing your thoughts with me, your constructive criticisms and any ideas you may have on how I can make the show grow. And no longer believe that it matters whether or not the door is closed in front of me or not; God's key opens every single door. I really hope that I will hear from some of you regarding this new adventure and I'm also hoping that you will understand my silence for the last month and a half and will accept my apologies for it.

<http://www.creatorleadershipnetwork.com/>

<http://nexmix.serveftp.org/createrev/player.html?noresize=y

>

My love to you and your families-

My birthday dinner...

Lobster, Filet Mignon and King Crab Legs...

Hail video...

Hail 2

Hail 1

It hailed like crazy just a little while ago..

It’s Sunday, October 18, 2009 and...(pt. 1)

The Author's Head's up: “This’ll be a long one…Visine anyone?”  :-)

So the big question for me now is, where do I begin?  I want to first share that there is no definitive reason for my “radio silence“, but there have been a variety of factors that have played a part in it. Most of those factors have to deal with my strength and Constitution, as well as, not being at the computer at the right time when I feel strongest and most willing to converse. Of course, had I brought my mini-handheld voice recorder, then I would've been just fine because I could have shared all of my thoughts straight on the tape and then simply played the tape back with the computer cable plugged into the headphone-out and, voilà; the majority of my words would have appeared scrolling across the page. Twas not to be though, so I shall continue... sigh.

(Just as a side note, in case you find any spaellingg airrors or you find a word that doesn't make cents with the sentence, sound out the word and you'll probably get the idea of what I had wanted computer to write instead of what it wrote)  ha.

Before getting into the particulars on specifics of our trip to Orlando, I want to share that both CC and I agree that the conference, beyond a shadow of a doubt, facilitated in changing our lives. Not just from having an opportunity to speak to and hear from the doctors who are specifically and actually focusing on the different types of periodic paralysis, but more importantly the relationships that became cemented upon meeting other members of the periodic paralysis list and hearing their advice and their suggestions and their encouragements and feeling their support of us; of me specifically as well as CC specifically and the kids and us as a family. If I look beyond this, I concede that the impact was huge on both of my parents who traveled to Florida with us and attended the conference as well, and my aunt Judy Clark who traveled with us to and from and was a supportive trooper from beginning to end; she also attended every day of the conference, and I believe every session within. An avid priceless blessing to the trip was that my cousin Montaigne and her husband joined us at the hotel for the conference and we had the opportunity(and took it!) to spend nearly every day catching up enjoying one another's company. It had only been a couple years since we had seen Monteeen and David when they came out with their son Jacob, San Francisco and then Old Town Sacramento. We had a wonderful visit with them then, but it was all too brief and we hardly really had time to sit down and talk leisurely, so when Monteen shared that she and David wanted to join us at the hotel for the conference, we were thrilled! Then, to add blessing on top of blessing, my cousin Val and her husband Ron and their nine children came to the hotel and sat with us down by the pool for an hour or so, on one of the days, and then we were all able to go out to dinner together. They also met us at the beach on Wednesday late afternoon and we all had a blast together; each of the kids that were able to come with her (5 of them) played with Missy and Josh in the surf and even showed both Missy and Josh how to boogie board, East Coast style!   :-)

Without question, my children have new friends for life that happened to be their cousins, third cousin to be precise, I think... anyway both kids were just thrilled to have met their cousins and met the family that was available to see us and even felt very good about the conference and what they learned as well, though I expect if you were to ask them what their most favorite part of the trip was they will probably tell you being able to hang out at the giant pool and lay in the sun. It was excellent.

Okay, now to share some more of the specifics of the trip, and I guess the best place to begin is last Thursday morning and go from there...
Thursday morning began at 3 AM; after getting about two hours of sleep, CC and I got up and began the quick load and pack into the Van, including children, so that we could head out for the airport by 4:00 AM. Though we left at 4:15 AM, we made it to the airport in reasonable time and managed our way through United's baggage check (each piece of checked baggage was a separate cost…thanks SO much United) and then through security and then on to the plane. I drove my chair right up to the gate and we waited for the pre-boarding to begin and then I rode my chair all the way down to the plane entrance, where I got up from there and made my way into the plane via cane and a stable arm and found our seats.

So we chose to do brief layovers both going to Florida and returning from Florida. Our layover on the way to Florida was in Los Angeles, and then on our return flight from Florida, we changed planes in Denver before continuing on to Sacramento. Now as far as the flights go, we paid for and expected what United calls Economy Plus which I don't think is very much more than getting an additional 5 inches of theoretical legroom. Being that you have to stow your carry-on baggage above you and below in front of you, if you, like we did, have two pieces of carry-on each, then one goes up in the luggage space above the seats and the other goes down below the seat in front of you, rather effectively taking up the approximate five extra inches of legroom and returning you to what is essentially glorified “cattle class”. Our flights to Florida were reasonably uneventful and not very noteworthy, with the exception that we learned that flying United's Economy Plus felt exactly the same as flying United's Economy or “cattle class”. So the first observer would look at this and say “…well then you should have checked your other baggage and only had one carry on to take with you…” which would've been just fine with us had United not be charging for each single bag you check and there were no options for us to minimize what we needed to take. Specifically in my case, I was bringing my laptop, which is unquestionably a carry-on, and I was also bringing in oxygen concentrator which is literally about the size of a car battery, only it comes in a blue canvas case attached to a mini, unit designed collapsible hand truck. Add to that my green bag which carries my medicines and my identification as well as our backpack that contained food, medicines and books etc., and you can see our situation; each of the kids, as well as Aunt Judy, all had carry-ons they each had to manage. Easy solution? Stop freakin’ charging people extra to check their luggage, United!!! 

Okay, moving on...
so I don't really remember much of the details regarding our flights out of California because I had taken medicine to help me rest and hopefully avoid any hits/attacks while in transport. Fortunately, there were no hits during the travel out to Florida and we were very encouraged by this. Actually, the only issue that I had, in terms of going to Florida, wasn't even attack related, it was actually when we had arrived at the Rosen Centre Hotel; I was disembarking from the handicap van we had rented and we were unfamiliar with the seated, height clearance levels, being that when we were riding in the van, I actually stayed seat-belted in my chair, with my chair secured to the van floor. Anyway, upon exiting the van and rolling my chair out on to the side lift, the chair kicked forward and I nailed my head on the side opening of the van, snapping my head backwards into the headrest and then bouncing forward, being restrained in the chair by the seatbelt. I was knocked for a loop. Now that I think about it...I probably shouldn't even wonder why if I'm not remembering much of that part of the trip, should I? Needless to say, that did not happen again, nor did have a chance to happen again because each and every person who witnessed me in the process of going into or coming out of the van all reminded me to “watch my head and be careful”, all of which was received in the spirit it was given. The cool thing was, I woke up the next morning without a bruise and just a minor headache and by all rights I should have had quite the conversational souvenir from my head's collision with the steel frame.

Next up is my review of the Rosen Center Hotel, where we stayed for seven nights was the location of the Periodic Paralysis Conference. I should note off the top, that the hotels median price for a room with two double beds or a single king bed generally about $300. Thanks to the work of the Periodic Paralysis leaders, and the cooperation of the hotel management, the hotel lowered their nightly rate, for attendees of the conference, to $99 plus taxes. We went with the understanding that the hotel is a five-star hotel and, as such, the lowered rate is exceptional. Upon getting to the hotel and checking in, we realized that we had not really done our homework on the hotel, other than looking at their webpage in an “overview” type manner and verifying the general room prices and such. I'm sure you can probably guess where I'm heading with this and that is that the five-star rating is more so according to the hotel itself than public opinion or travel agencies and travel sites. As I began to look at several of the Internet booking sites, such as Travelocity, Expedia, Hotels.com, 1-800 hotels.com, I found that be reviewed ratings published for the Rosen center Hotel were between 3 and 4 stars, with the majority down towards 3 and 3 1/2 stars. I would have to say that, overall, our stay was around a 3 or 3 1/2. If you wanted to use the hotel's Internet service in your room it was $10 for 24 hours. If you wanted to use their exercise room it was a minimum of $10 per person per day. If you wanted a refrigerator (we needed to keep my drinks and food refrigerated during our stay so there was not much of a choice) the cost was $12 and if you want a microwave oven in your room that was an additional charge as well though I don't remember to me how much. During our first nights stay, we had not gone grocery shopping at and I needed something to drink so one of the kids went and got a small bottle of water, approximately 4 ounces from the soda machine at the end of the hall, and they paid a dollar for it. At another point, my wife went down to the deli asking for quarters so that we could do our laundry upstairs and she had to talk to the person behind the counter into giving her the change she needed because the policy of the hotel, it would appear, is that we were to use their laundry service instead of using the laundry machines.  The hotel contains a restaurant or café three different types of bars including a sushi bar as well as their own deli... if you wanted a plain hamburger on a bun it cost you $15. The bottom line is to do the homework and find out it you are going to be billed via an “à la carte” approach or not.

So, having said all of that, I'd also like to share that the hotel, in general, was very well maintained in the public areas; no obvious stains, no dirty windows, no dust, cleaning staff was constantly cleaning tabletops, chairs and seats and they always asked if we were enjoying our stay. We had a few experiences where some of the hotel staff actually went out of their way to take care of a request of ours, which we greatly appreciated. It is also worth noting that the deli as well as the restaurant did what they could to accommodate our dietary constraints; my constraint is an exceptionally low salt diet as well as low carb. My aunt's dietary issue deals with needing her foods to be gluten free and in many ways is much more restrictive than mine.
Now, regarding the purpose of our trip and the primary goal of going to Orlando; the Periodic Paralysis conference itself: the conference and Saturday and Sunday but also included a greeting time on Friday evening for the attendees to meet one another and finish up any conference registration issues and also sign up for a blood draw appointment. I don't know how to describe how I felt when I first recognized the names on the nametags of the different people that had come that Friday evening. These are the people, many of whom, I have corresponded with via the HK PP list serve and only imagine what they would look like. Some of them looked nothing like what I thought they would look like while others looked similar to what I expected. As a result of the weekend conference, I am proud and happily encouraged to share that my extended family has now grown significantly because these folks and I can solidly relate to each other, and there is no question that most all of us truly care about what happens to each other and what we go through. Okay back to the conference: Actually, there was a session on Friday evening, at the end of the meeting time, where we could listen to a doctor who has designed a software for the diagnosis of neuromuscular diseases and related issues. Though the software is primarily focused and available to medical professionals, I would imagine that it could be a very helpful tool for those who are seriously searching to find out what it is that is going on, or better said what isn't going on correctly, with their body. I certainly plan to make my primary care physician aware of this software for his consideration. 
For me, Saturday and Sunday were huge days, but, in my case, not so much for what I learned from the different key speakers, but because of what I learned from the other attendees. There must've been a dozen of us that had attacks on Saturday and again a dozen or so on Sunday, and Saturday was the very first day that I watched another human being suffer the same kind of attack that I have been suffering for several years and more drastically for the last three years. I saw some attacks that I would consider to be very mild and I saw other attacks that looked more vicious than most of mine. The conference planners were prepared for the attendees to have attacks; both Saturday and Sunday we had two paramedics sitting in the back of the room, for the entire conference time, helping to carry and care for those of us who went down. They also prepared a rear corner of the conference room with laid out towels, pillows and blankets so we would have someplace to go and not have to leave the room during an attack. They also had a person or persons videotape nearly all of the attacks so that these videos can be edited and then posted onto the Periodic Paralysis website for people to see in hopes of helping them determine whether or not what they are experiencing is similar or same to what they are seeing in the video, thus giving them a solid direction to pursue and investigate with their doctor.

Both of my parents took serious notes all weekend long along with aunt Judy and most certainly CC. I would have as well had I not suffered medium sized hits late Saturday morning and right after lunch on Sunday…

… to be continued

well, I'm going to have to post this as is for right now and will continue, hopefully tomorrow, with more of what I learned and experienced over this past week and earlier weekend.  Consider this as part one either to or probably three posts. I began this yesterday,, and it is now 10:45 PM on Monday night and I is tired.  More to come...

     

         

      

  peace-

Leaving for the airport

Leaving the hotel for the airport...

Dinner out near Daytona Beach...

La Familia just outside Daytona Beach. A mini-family reunion; my family (my parents and the 4 of us) with 2 of my cousins and their families (though not all of their kids could be here for this pic.).

Well, here we r in

Well, here we r in Orlando; over 5 hrs in flying time. Everything has made it through, from what we can c.
More later-
w

Sunday was and went

 

Missy didn’t sleep good Saturday night so we had her stay home and Joshy went with CC and me to 11:15 service at Capitol Christian enter.  I am able to tune into Pastor Cole’s messages and style of conversed delivery; it just works for me, as well as for CC.  Pastor Cole was particularly passionate this morning and there was much to be learned for those who have ears to hears…

Right as we got to about 12:30 PM, I became aware that I could not move my feet, toes, legs or even knees, and subsequently realized that I had been holding my breath for long periods of time, something I tend to do subconsciously when I am experiencing unrelenting pain.  Right about then, CC leaned over to where we could see one another and we began to exit successfully.

Getting into the van was a little bit of a challenge but with a little cooperation from my end, it went smoothly as was feasible.  During the ride home I was noticing a slow increase in symptom, though I had already taken my liquid Potassium (Liquid K+).

Nothing else really transpired from the hit.

Eyes are 2 tired 2 continue…….

 

Difficulties

 

It’s been quite a while since I posted and, unfortunately, that has been due to daily attacks for the past 12 or so days.  I did get a break for about 48 hours this past week on Wednesday and Thursday, but Friday’s attack was savage and hit me while I was home alone, again.  This hit was harder because both my legs began to experience muscle spasms AND cramping simultaneously, confining me to my black chair.  CC was at Joshy’s school when it hit and she came home in a manner of minutes, but the nastiness had locked on and began to claim other muscle groups as I began to battle the fear of not knowing what was coming next and knowing I was by myself and that Annie was not crated which would have been problematic had I called 911.  The attack lasted for 45 minutes to an hour; brutal cramping in my calves and abdomen , spasms eventually everywhere else and lockjaw to top it off.  It’s been a very long time since an attack brought tears…

Today I spent in bed for nearly the whole day and could only walk with the use of the walker, and even that was a snail’s pace.  I demanded of myself to go and up and down the stairs a few times in order to push oxygen back into the muscles, knowing full well that it would be painful and slow, but I did it…granted, a couple times I needed CC under one arm to make, but I STILL made it.

I have NO idea what set it off, no clue at all.  Those attacks are the ones I fear the most, I guess, because when the attack begins, I normally run my immediate history back through my mind and can normally see the trigger in hind sight, but with these attacks, it becomes an endless mental search that eventually exhausts me from the inside out.

You know, now that I’m thinking about it, those of you who read this via Facebook should know that these posts or “notes” are coming in directly from my blog entries at http://theaudiopilotsblog.blogspot.com

I’m considering closing the link between my blog and Facebook because much of what I’m sharing is exceptionally personal and Facebook by design, is not and I’m feeling like I’m sharing too much to too many people in such a general manner.  I’m thinking that if anyone wants to read the blog that they can simply go to the blog and check it out instead of me linking it to Facebook and leaving it “out in the open”, so to speak, for the casual Facebook reader.  My intention is to use this post as an open invitation to anyone who is interested in my life or my terminal joust with this rare disease, to go to my blog, http://theaudiopilotsblog.blogspot.com and read all you want and have access to all the previous blog entries as well some pics that are not on my Facebook profile.

Well, that’s it for now.  Praying for a better tomorrow/today (Sunday).  peace-

Long harsh attack this AM.

Long harsh attack this AM. have been down for the rest of the day...

Sunday, September 13 Re-cap…

 

I'm impressed with myself that I'm writing this long before the wee hours of the following morning... I hope this font doesn't bother you; I'm liking it at the moment.

At exactly 1:30 p.m. this afternoon 15 years ago, Melissa Mae Odum was born in Redwood City, California. Her day today was celebrated one day early with having four of her close girlfriends surprise her for an overnight stay and celebration here at our house. I guess the only significant bummer from yesterday as it would pertain directly to Missy, was that she had to run 10 miles that morning so she was very tired come the afternoon and a bit more low-key and less hyper than she might have been otherwise. Unknown amounts of caffeine later in the day, found her still awake this morning around 5 AM, the final of the four of them to fall sleep. She then slept until 10-ish and was up and going before I was (I woke up at 11:48 AM!).  The girls decided that they wanted to go and see “G-force” at a 1:50 PM showing, so we all loaded up, including my motorized chair, and we headed out for an afternoon at the movies. I have learned from the past that sometimes going to the movies can be problematic for me, whether it's because of the stress in the movie or because of the temperature and climate change; going from an air-conditioned building out into hundred-plus degree heat. Fortunately, today's movie was not very stressful (I mean, we're talking guinea pigs here) and on exiting the theater, there was literally no difference in temperature from indoor to outdoor, so I escaped my known two primary “going to the movies“ issues. I did learn, unfortunately, that there is a third issue for me to consider, but that would not just be from going to a movie per se, it would apply to any period of time where I would be seated for more than an hour at a time in the chair. The third issue? Do not begin to assertively stretch immediately following a long, seated period of time.  Exhibit A.: Before getting into the van, following our exit from the movie theater, I chose to do some leg and abdomen stretches before getting into the van; I was in error. Very shortly after having started the stretching of my calves and my abdomen, what first began as flutters quickly turned into spasms across my waist and my chest; the process had begun. CC and Missy helped get the liquid potassium into me and Joshua stood beside me holding my hand and encouraging me to squeeze his hand as I needed to in order to release the pain of what was going on. It did not take long for my body to go into full paralysis which was very awkward for Missy's guests who have joined us to go to the movies and had to watch all of this unfold. As we began to drive and take the girls home, Missy became my support; holding my head and my shoulders against the seat so that I would not end up ricocheting around in the front seat, during turns and stops and starts. I became infuriated with myself that this had happened on her birthday, in front of her friends, and as a result, most of the car ride home she spent in tears, resting her head against mine and quietly reminding me and encouraging me to breathe deeply and not to panic. I could do nothing to reassure her or comfort her or stop her tears until my body settled down after the potassium had fully gotten into my system, which was after the final girl was dropped off. Needless to say, it made for a very quiet ride home.
*Sigh*

CC and Missy helped me get into the house and into my black chair where I stayed for the rest of the evening while the three of them went to a roadhouse steak restaurant here in town for her birth day dinner. It's just not how I wanted the day to go or end up but there's nothing I can do to get it back or to change it and moving on is the only option. Missy, like her father, mother and brother, cherishes family and family time and, once again, thanks to a debilitating disease, we are forced to adapt our intents and our desires to the realities of minute to minute -- day to day life as filtered by HKPP. Some elements of that look a lot like the beginnings of a pity party and, perhaps inside, maybe that party is actually going on but in an underground sense; something that I need to battle and excuse myself from on my own, but there is a truth to it as well and that is that perhaps I need to be more considerate of others and my family in terms of participating or becoming involved in functions that may radically change if I suffer an attack, and by radically change I mean that some, most or all involved are negatively affected by my attack.

Tomorrow is Monday, a new day and the day that I can and may rest and recover; all I have to do is choose to do it, and if I am at all honest with myself and most all of you, I'll have to confess that choosing to rest and recover just isn't as easy as it sounds or as I want to be sometimes.

As I remember whispering to Missy while we were driving home," I'll be okay; I will get better, you'll see..."

From Tuesday through Saturday

It seems that I've gotten caught up in the new speech recognition software and have blown about 45 minutes just playing around. Sigh.

Today is a new day; in its newness, one can find hope and encouragement and even refreshment should they choose to seek it. I must confess that having gone nearly 6 days straight with attacks each day, and yesterday having two attacks in one day, I'm finding it difficult to put the energy into searching for anything at the moment. That having been said, what I don't want this entry to be is a pity party or a lamenting how life can suck at times. What I do want this to be, however, is a general recounting of the last five days or so. I believe my last entry into the blog came Thursday night following a hellish day. Anytime you see a blog entry that's only got a couple lines of writing in it then I have sent that posting from my cell phone, likely either from my bed or my black chair downstairs. Most often, I use my cell phone to post a blog entry when I do not have the strength to get up and walk to the computer.

So where are we? Yesterday was Saturday, the day before my daughter’s 15th birthday, and the day came with two smaller sized hits, both of which landed me in the black chair with oxygen and the latter of the two hits found me leaning my back against the wall with my knees locked in an attempt to keep from falling and my wife in front of me with her arms under my arms, holding me up until Missy could come downstairs and help. I don't know what triggered either one of these hits, but I did have a gut feeling when I woke up that I was going to take a hit at some point during the day; under these circumstances, I do not enjoy being right other than to take confidence in my gut feelings. One attack happened in the midmorning and the second attack happened in the early afternoon. Though it has nothing to do with me, I'm very proud to share that Missy ran 10 miles today in an effort to raise money for her school cross country uniform and she ran most of the way but he regardless of speed, she finished the race on her own and I could not be more proud of her. My heart goes out and thanks to those of you that were able to support her in her pledge of running the 10 miles; thank you.

The day before yesterday, Friday, Missy had a track meet in Oroville and was gone for most the whole day. Upon returning to the school around 7:30 that night, Joshy, CC and I picked her up from school and drove to her current favorite restaurant, Denny's for an informal, celebratory dinner. By the time it was ready for us to order, I had read through their nutrition guide front to back and realized that there was nearly nothing I could eat; something I had suspected but did not know for sure. I went for the safest dish that we could think of; planes scrambled eggs and playing hashbrowns. All of us were pretty hungry, me included, so when the food came I tried a couple bites and waited for a minute or two to see if I would have any immediate reaction. Seeing no reaction initially, it did not take me long to finish off my plate of food, but, right about the point when the three of them were finished with their dinners, I was having a difficult time thinking and speaking.  Most of us with periodic paralysis refer to this experience as “brain fog”, a typical precursor to an attack. If I recall correctly, both kids helped me get out to the car while CC took care of paying the bill and then we drove home and CC and Missy help me get up the stairs and into bed. I do remember that my job was locked and I was panicking because I could not open it myself, but CC applied in the end downward pressure at the base of my jaw which released my tongue and clenched jaw. After a cocktail of liquid potassium and apple juice, along with my nighttime meds, I waited for the pain meds to kick in and hoped that I would escape my body's retribution in the morning. No such luck. I realized when I woke up Saturday morning that my jaw was very, very sore and somewhat puffy on both sides; I figured out fairly quickly how to be able to maximize my verbal communications with minimizing my mouth and jaw movements. Yogurt was for breakfast.

Thursday's attack was ugly. CC and I were on our way to our PT appointment that morning and on our way there, CC, along with the pickup truck behind us, decided to change into the same lane at the same time. Our vehicles never touched each other, praise the Lord, but there was some swerving and screeching of truck tires and my body locked up. CC told me that after we had arrived in the parking lot for PT, she gave me some liquid potassium and shortly thereafter Mark came out with one of their rolling office chairs and the two of them got me from the van into the building, up the elevator and into their office and then into one of their private rooms. I have a vague recollection of the symptoms mellowing out until my chest got cold at one point and the chills began, followed by more spasms, cramps and muscle locks. I don't know how long this lasted nor do I remember much of anything after that. I understand that they got it back out to the car the same way they have brought me in and that when I was still in the office, she gave me another dose of liquid potassium which eventually mellowed out spasms and cramps. I spent the rest of the day and evening in bed and I'm not able to remember much else. Obviously, I did send from my cell phone while I was in bed; good for me.

Wednesday was Missy's Back-To-School Night and, though I have a small hit in the afternoon, the evening came out fine while we were at the high school. I am so very thankful that nothing happened to me while we were there: that would've been terribly awkward for Missy and I would've felt like trash. A borderline, small hit began on our way home from the Back-To-School Night but it did not fully manifest and I was able to get away with just taking my regular medications going to bed.

I'm kind of fuzzy on Tuesday night’s hit, but I do recall talking with CC about it and we both felt that it was a combination of three things; emotional stress, higher sodium count dinner and being physically wiped out. Unfortunately, any one of these three can be a trigger in and of itself, so after-the-fact, it was not too hard to figure out.

Okay, it's 3:17 AM and I really need to stop and go to bed now. Once again, I am so grateful for this software (may God thoroughly bless you Greg) because without it I would not have been able to have posted this blog. I also just thought about this; I can't remember if I included this in a previous blog, but this software also played a critical role in my getting help a week ago Thursday, I believe. My body had gone into nearly full paralysis during the time which I was posting to the blog and that blog entry actually depicted what was happening to me before most of the rest of the things went South. Because I still had the headset mic on my head, I was able to use the software and my right index finger to be able to send two e-mail text message to CC, for her to come home from a coffee meeting she was having with one of her good friends, because the symptoms were getting worse and the attack had begun. For whatever reason, I did not have my cell phone on me and thus was not able to speed dial her, which I have done in the past. Had it not been for the software, things could have been quite bad. My buddy Scott Shuford called tonight and he suggested that I share this experience with the makers of Dragon NaturallySpeaking as a testimonial; as per usual, I think he has a very good idea.
Okay, it's 3:26 AM now. I'm done

 

Hard day: attack on the

Hard day: attack on the way to PT. Lasted an hour. high price today...will see about tomorrow.

Another hit 2night after dinner.

Another hit 2night after dinner. Not sure why this time. It's looking like a very long weekend. Wiped. Done 4 now

Bad attack followed my last

Bad attack followed my last post but I was able to voice a text msg to CC and she came 2 my rescue. Tuff & hard night.
:o(

Realizations

To begin with it's worth my stating that I'm using my headset mic in order to communicate for right now. I don't know that I'll be in a position to do my normal editing before posting this, so hopefully all of this comes through clearly. That being said, I'll describe how I'm feeling at the moment in order to be able to look back on this invalidation and/or understanding; when I woke up this morning, the sheets as well as I were soaked sweat and my mind was unsettled the point that I was wondering if an attack was looming only moments away or not. As it turned out, no attack took place though I have experienced a number of normal precursors to an attack. As I am dictating this right now, I'm having to concentrate very hard to keep my words and my thoughts clear and cohesive; it is not coming easy to me right now where it did all of 15 or 20 minutes ago. In the last 5 to 10 minutes I went through another profuse sweating, from the top of my head to my feet. Along with that, I have lost most all of my strength and even opening my eyes see is a challenge. My potassium and other medicines are all downstairs while I am upstairs and I am realizing that this is problematic at this point; I'm not quite sure how to remedy this at the moment. I'm short of breath taking concentration and energy to do and that is typical when I experience the heavy sweating this isn't meant to alarm anyone because I'm sure that things will turn out like they normally do and be fine, but it is for my own validation and record of the reality of the symptoms.

I have other thoughts that I want to share but I don't think now is the time so perhaps I will do that later today. Time to sign off. I'll be back later.

I found Todd Borger's blog!

The link below will take you to Todd Borger's blog. Todd was a good friend and former bandmate of Scott Rose and mine (he was/is? a drummer/writer).
Beware though, reading his blog will break your heart; in it he shares his rememberences of Anna, his 8 year old daughter who was tragically killed last May 7 while biking with her mother.
It is so, so hard to read of another father's pain and suffering, being a father myself.

My heart breaks for you Todd. Peace.

http://toddborger.wordpress.com/


-w

Remembering “Heroes” and Other Currents…

 

 

Well, once again I find myself in the position of having to recall several days worth of activities as opposed to simply recalling one day at a time, because I would have been making daily or nightly blog entries.  Needless to say, it's more than annoying from two main standpoints; the first standpoint is that my memory has proven to be unreliable over the past 2 1/2 years or so, due to one of the side effects of one of the main pain medication’ that I take. The second reason that it is frustrating is because I want to use this blog as a daily event and record of living with HKPP, and I know that if I do not an accurate recording of my daily living and struggles with this disease then there is less for me to learn in the long run.

Speaking of memory issues, I missed my physical therapy appointment this morning because I did not recall receiving a phone call towards the end of last week, letting me know that there was a change in location for my appointment this morning. I'm pretty sure that most who read this know and remember that I am not allowed to drive anymore (and that we only have one vehicle which CC uses for all transportations and to get herself to and from work each day), and being that I'm not allowed to drive it anymore, I need to rely on others to take time out of their days to help me get to and from appointments or events that happened during the time frame that CC is unavailable to drive me to. As was the case last Tuesday, this morning my cousin Chris gave up a good portion of his morning to come and pick me up and take me to my physical therapy appointment and the end result was that I asked him to take me to the incorrect location because I did not remember the phone call from the clinic alerting me to the change in scheduled locations. Chris did seem very cool about the snafu and even offered to take me tomorrow morning to a make-up appointment from missing today’s.

I have not been sleeping well over the past several nights and I believe that is the reason why I have either been napping or experiencing crashes each day in the afternoon to early evening hours I'm forcing myself to get up in the mornings and make sure that Josh gets off to school, which is a no-brainer and a good thing to do, but the issue is that I'm not getting to sleep in a timely manner to allow my body time enough to rejuvenate and rest from the previous days activities and waking hours; we as a family, me specifically, need to be going to bed earlier on more of a regular basis to fix the issue at hand.

As I'm writing right now, I'm using my headset microphone to dictate this blog entry and more often than not, I close my eyes and somewhat lean forward, resting against the desk as I think of what it is that I want to say and communicate. This, in another itself, is not really a problem.  However, when you're tired and you lean against something and have your eyes closed, the likelihood of falling asleep is greatly increased... at least in my case it is.

About a week ago, CC and Missy coerced me into watching the first several episodes of the TV series “Heroes”, the final episode of the fifth disc of the first season's episodes, I watched late yesterday morning. Each episode is an absolute cliffhanger and, in my opinion, is superbly directed and shot and includes an excellent cast of characters and actors. I'll come back to why this is relevant in a minute or two…

Yesterday came and went without an attack; a fact that I am blessed by. To that end, I believe it has been several days now since my last attack which I think was a week ago this past weekend. Sunday was a good day in a productive day, though we all slept in to some extent and once again did not make it to church. I am more than frustrated with myself over not making attending church a high enough priority, so much so, that would out rank sleeping in. Granted, there are obviously other factors that weigh in on going to church on a Sunday morning, but I know that I have not been much of a leader in terms of getting my family into church on a weekly basis. Typically, our weekends are spent doing household pick-up and chores along with different yard projects unless the heat outside is prohibiting, but this past weekend was primarily spent indoors with Saturday being a marathon video/movie day for  me, Missy and CC, while Joshua either was on the Xbox or was playing on my computer. We watched several episodes of “Heroes”on Saturday and a few more on Sunday; I think I began watching the series on either Thursday night or Friday night, along with CC and Missy who both wanted to re-watch the beginning episodes and see if they would notice anything that they may have missed the first time they saw them. I'm looking forward to getting caught up with them in terms of where they are in the series, but I am not anxious to watch the series while it is on TV because the level of stress in each episode combined with the lack of resolution at the end of each episode could certainly prove to be a contributing trigger to an attack for me; I would rather watch the series on DVD where I have better control and easier access to finishing storylines and pausing at stressful points than if I were to just be watching the show on TV.

No, I have not read anything about the possibility of their actually being a black widow *season*, but if there is such a thing,, it is now. As father of this family, it is my duty and marital responsibility to extinguish or neutralize any and all spiders that are visible or indicated. Sunday night, before finally going up stairs and going to bed, I did a thorough walk of our back patio, yard, retaining wall and garden with a can of spider insecticide and managed to dispatch well over two dozen black widows; from the very small immature ones to the largest which was nearly the size of a dime, not including its leg span. Then yesterday, I went throughout the entire yard and completely removed all spider webs that I could reach and find in order to better learn whether or not I was successful in completely eradicating the arachnids or not. Not all spiders were black widows though over two dozen or; there were some spiders that showed the same type of body shape and size but did not have a red hourglass on their belly. Unfortunately for them, as far as I am concerned, there is “guilt by association”and they are no more.

On a completely different topic it is worth noting that even though I have pushed some of my dietary boundaries within the past week, they're still have been no attacks, fortunately. I find myself, like most folks I know, experiencing cravings for different types of tastes for foods so from that standpoint, it's probably a good thing but I don't have my license and cannot drive because cravings can be very difficult to deal with at least as far as I am concerned CC was noting that last night, after eating dinner that the likely reason that I was not feeling very well was because I had some boxed, prepared pasta which is more often than not, a straightforward no-no for people with HKPP; a fairly straightforward cause and effect, if you will.

It feels and seems like my creativity has run shallow again and that I have very little to contribute, creatively speaking . I have half-done musical projects and musical ideas that are just sitting, waiting to be addressed and/or finished. Bleh.

Both kids are doing well in school and enjoying their classes and their friends and, from all that I can tell, both are doing well being in separate schools which is a first for them. During the summer Missy joined her high school's cross country team and she has been practicing and learning through part of the summer what all of that entails. This past Friday was the school’s first cross country meet which took place in Lodi. Missy and her team were taken via bus to the load I meet where she competed for the first time. Her mom and I are so very proud of her, it's beyond words. It was a huge step for her (not to mention a slightly large step of stress for her father who worries about her traveling to and from field trips and other excursions)

Well, my brain feels like it is emptying out of the different things that I wanted to share. I do think its important to relate that, all things considered, which includes the past nearly 3 years, our management of this disease is currently giving me the highest degree of normalcy that I have had since my diagnosis. By no means am I anywhere near what I would have termed to be normal over three years ago, but it has been a very long time since I have been taken to an ER via family or ambulance and nearly all attacks are manageable without the need of medical assistance. I do have some other random thoughts as they pertain to daily life but I am more tired than I am inspired at this point. It is time to call it for now.

Peace

Wednesday PM

 

 

No hits today, thankfully.  The highlight of the day was a good friend calling to say that he had some errands to do and offered for me to join him for a couple hours.  Very cool.  What may be mundane for some might be the difference for others; you never know…I had a good time hanging and talking outside the confines of the house.

Not much more to report for today, though I was able to take a couple hour nap…that seems to be a need for me these days.  Hard for me to tell if it is due to needing sleep or if I am crashing in some manner.

On to tomorrow-

peace

Quick Note

 

Just a quick catch up to share that we went to Sacramento’s performance of “Cat’s” last night, which was fun to do as a family though I paid the price as we were leaving with a fairly full hit (though more brief than others) on the way home.

Today saw no “hits” per se, but I did suffer a crash in the afternoon that I could barely wake up from; I must have slept for a couple hours solid.  It cost me time playing with Joshy which had me mad at myself.  I know it sounds odd, but I think it might have been a result from eating a sugarless candy; though the candy does not have direct sugars in them, they have a sugar alcohol noted in the carbs section and I’m wondering about that.  I went down pretty fast.  Dunno.

CC had an outpatient surgery to remove a cyst from the center of her back.  I was allowed to be in the room with the surgeon and nurse during the procedure.  CC amazes me; her pain threshold surprises even most doctors and her strength is unquestionably God-given.  What we thought was a small marble-size cyst has actually gone deeper into her back  and was not spherical in shape, to our surprise, nor was it as small as surmised.  End result, she’s got a recovering wound in the center of her back and the *duty*/responsibility tables are now turned, in that, she cannot pick up, lift, stretch for, push or pull without risking opening her stitches, and WE must cover EVERY aspect for her so that her recovery is complete and without complication.  Anticipation and calculation are going to be key ingredients over the next couple weeks.

Both kids began schools today: Missy as a Freshman and Joshy as a 5th grader.  They both reported having great days at school and seeing friends.

Lastly, I don’t know about your neck of the woods now, but around here, it is Black Widow season and I’ve got Widow webs all over the yards, patio and even retaining walls.  I HATE Black Widows.  There…that oughta give you good dreams…   :o)

That's it for now-

peace

Coming Back

 

Today is Wednesday, August 19, 2009 and it has been quite some time since I've actually posted legitimately. Much has gone on in the last number of weeks, starting with our first attempt at a mini -- vacation down to Monterey for four days which went very well. This past Sunday night, marked the end of a seven day venture up into Oregon, where we stayed in a cabin, right on the Metolius River in Camp Sherman, just outside of Sisters, Oregon. The way that the trip worked out to be, was that Joshua went up with my sister and her family on Friday and met my parents, who also went up on Friday, at the cabin while CC, I and Missy stayed behind and left on Sunday morning because we were invited to a wonderful wedding on Saturday that we could not miss. Towards the end of the week, CC and Missy needed to head back down on Thursday so that they could be at Missy's high school orientation meeting on Friday morning but Joshi and I remained at the cabin with my parents and my sister's family until Sunday morning when we all left to come back down.

This Oregon trip was not without attacks but fortunately those attacks were easily managed and easily recovered from; in the big global picture of HK PP and it's harassing attacks, I'm a very blessed and fortunate man to be able to get up and walk a matter of hours after being struck down. There is a listserv of folks who are contending with one form or another of periodic paralysis and a number of those people fight every day for some element of normalcy, just as I and we did in the past 2 1/2 years, and I believe that I need to be mindful of the blessings that I have and the degree of normalcy that I do have now and read my own writing to accept that every day is a gift but the shape and the wrappings may be different.

I took a lot of pictures with my cell phone and I plan to post those pictures at one point or another, either here through the blog or on my Facebook page; the plan being that if it's on Facebook that everyone would still be able to see the pictures even if you're not a Facebook subscriber.

If I were to choose my most favorite activity of this Oregon trip it would be the few times that we were able to go up to a mountain quarry area and fire off several rounds from my Ithaca 16-gauge shotgun, my Marlin .22 lever-action saddle gun and a good friend's .22 caliber rifle with scope. I'm not exactly sure of how many rounds we actually shot off in terms of the .22 caliber guns, but we did shoot off somewhere in the ballpark of 75 shots with the 16-gauge. What was most enjoyable to me regarding the shooting, was that everyone had the opportunity an invitation to shoot any one of the guns (and most everyone did shoot the .22)  and that even Joshy tried shooting the 16-gauge (as did my brother in law CP, my sister Mindy, my niece Kirsten and my nephew Erik). At the end of our last shooting excursion for this trip, I knew that I was coming home with a much more comfortable feeling of shooting my 16-gauge that I've had in probably over 30 years. It was a real confidence booster for me.
As far as the trip goes, I know there's much more that I could share but my mind is drawing blanks at the moment I'm getting kind of hazy on details so I will hold off until I have a clearer head to recount other days activities.

In terms of attacks, I did not have any attacks during our travels but I did have an attack manifest when we were returning from an excursion to one of the local lakes; I think that I got cold and that became the trigger. The other attack was after being at the cabin for some period of time and realizing that I was getting week very quickly and would have been in a very awkward position without getting assistance to the couch in the cabin.

After returning home, Monday was spent recalibrating and resting which past events free. Yesterday was my first physical therapy in over a week and things felt very good and I was encouraged; looking forward to Thursday's PT appointment in hopes of being able to do some exercises as well as the stretching.

Today, unfortunately, did include an attack which began right after finishing our lunch at Red Robin; we have come to recognize that when attacks happen while at or just after a restaurant, they are more than likely triggered by sodium or possible high carb intake and in this case I believe it was a sodium issue. After returning straight home, I was able to walk into the house on my own and get myself into my chair but shortly thereafter things kicked into gear and I was down for the next five or so hours and my son was very very disappointed that I was not able to play Xbox with him as he had been hoping during lunch; it's been nearly a solid three years of battling this disease on a daily basis and yet it still crushes me when I am not able to keep my intentions or commitments and I hear the disappointment in the voice of my wife, my daughter or my son, as our plans changed radically because of the attack. I'm willing to bet you that they don't write about these types of things in the medical journals when they talk about people who suffer from HKPP... Maybe they should. And then there are the doctors who suggest and scoff that we really aren't suffering anything in the physiological sense but that it's all in our heads. Shame on those who would think that I would choose to put my family through this, let alone myself

Well, before this gets too much darker... I think I will close out this post with a strong reminder that regardless of how I may feel and regardless of what triggers may come and regardless of the outcome of those attacks, my God still holds me in His hands and this disease cannot change that.

Please pray for a good nights sleep and also, please be praying for my dad who is recovering from knee surgery. My prayers are that he would recover fully and be rejuvenated by the results of the surgery and that there would be no complications no issues no problems whatsoever; those are my prayers.

Peace.

Greetings from Sisters Oregon- Today

Greetings from Sisters Oregon-
Today is r last day here & we will b driving back tomorrow. No real cell reception here...

A pic from Scout Lake in Oregon...just beautiful...

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What happens when an empty soday can meets a 16 guage shotgun... :o)

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Today's bikers to a near-by lake!

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Nothing Witty at the Moment…

 

 

Sorry it’s been a while…again.  Another crash today; that makes 3 crashes in 4 days.  All of them, as far as we can discern, are due to the heat and my exposure to it.  That sucks.  And it sucks more-so because, for the foreseeable future, the temps are going to be in the mid-90’s or low 100’s.  There are definitely points where I wonder if we should just go to the ER in hopes of some sort of physiological re-set of my system, but it seems that every ER visit is an actual battle just to get proper care and I certainly CANNOT go in without someone with me as my advocate there and then, otherwise I would be triggered into an even larger attack, we’re certain.

Today’s attack came while at Joshua’s “Summer Olympics” at his gymnastics center.  Praise God that I was with CC and Missy, along with Aunt Judy, Uncle Norman and my cousin Chris, all who came to support Joshua and be there to see him.  I remember the whole time while there and was able to see him take the small stand and receive his medal.  I could not have been more proud and was humbled that the Clark’s wanted to be there and were able to make it work.  I know that my parents and my sister’s family would have come up too, if they could have made it work, but it wasn’t feasible and we all understood that, including Joshua.

I still have the Monterey pics to post up, which I will likely post here as well as Facebook, though that is twice the work.  If I can figure out a way for you-all to see the pics on my Facebook page then I will just post them once and link it here in the blog.

Well, that will have to be it for now.  More to come…

peace-

Monterey Blessing...

This is a pic of Sierra (Ash) and me in Monterey. My heart was filled and greatly blessed by the opportunity to see her and her daddy, Sam Harman.
:o)

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14 years in the making..Sam & Wade

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We are at Rio Del Mar Beach for the afternoon!!

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Can you guess what was for dinner...?

We ate dinner at the Fish Hopper in Monterey and not only did CC and I get Filet Mignon AND lobster (we both ate for $20 each), but they prepared EVERYTHING for me with no salt! Absolutely fantastic!
After spending the entire day at the aquarium (from 11:00 am till 6:00 pm), we ate a wonderful meal sitting by a bay window overlooking the Bay itself and watching otters and seals playing.
God has blessed this day.
Now, we go back to our motel room with the 4 person jacuzzi in it!! I can do this.

:o)

Scuba Joshua!

Joshy scubas in Monterey!!

Joshy goes scuba diving!!

Sorry this is sideways (as are a few more); when I get back home, I will orient them correctly. :o)

Lunch in the Aquarium Cafe'...

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the tat...

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Missy getting an air brush tattoo...

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More Boardwalk...!
Oh yeah...and a WONDERFUL 71 degrees!!

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...at the Boardwalk in Santa Cruz!

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Our 1st day in Monterey in several years and having breakfast at "Grandma's"; our last time here was 14 years ago. Too cool.
We are excited.

Last night's ride to the Bay Area came with a cost but it was paid and we kept on going and arrived after a total of 6 hours driving.

Time to eat!
peace-

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We are driving down 101-South

We are driving down 101-South through San Jose...a couple of hours from my favorite location in CA: Monterey.

Friday Night Now

 

As of right now, 9:16 PM on Friday night, I'm working on relaxing at the end of a fairly tiring day, yet not a bad day. The highlight of today was taking any for a walk over at the park that's close by our house. Missy had a friend sleepover last night so the two girls along with Josh and my parents and I all went over to the park, along with Annie. I took any for two loops around the entire park while the kids rode bikes in the scooter and explored the park in the creek that runs through it. A landmark for today is that my dad wrote my bike over to the park and that the first time he has been on a bike in over 20 years, according to him; that we'll see how he feels tomorrow...
the temperatures were in the low 80's and I had plenty of water with me, so all in all I think everything went very well. I ran my chair until it had barely any battery life left and was able to ride home with it as well.

No attacks today and no crashes; after being out for as long as we were at the park, I thought it was quite possible that there might be a crash or a hit that would take place simply due to my being in the sun and the heat and being "on", but I am blessed to say that nothing negative transpired (other than a lady walking to small to medium size dog's who did not keep them on a short leash when they passed by me and Annie; one of the dogs continued to bark but did not come close to her while the other dog lunged at her four or five times without the owner doing much about keeping it away from any. At one point I was able to reach past Annie with my left arm and knock the dog about 4 or 5 feet away; and the lady kept walking, never said sorry, never apologized, nothing. Space space here I am protecting 100 pound dog from two 20 or 30 pound dogs, when in fact I'm actually protecting the two dogs, in reality. I'm pretty sure if I had let Annie go or if I had given any any length of leash at all she would've made short work of the two obnoxious pets.)

Well, I've been writing for about 30 minutes now and I'm tired. More later --

peace

Can't sleep

So it's 2:37 in the morning Wednesday morning and I woke up from a very light sleep about 45 minutes ago and I'm waiting for some of the medicine that helps me sleep, to take effect. It seems, over the last two or three weeks that my body sweats have been very pronounced during the night and morning while in bed. At first I thought that had directly to do with what I was eating just before going to bed but there were a number of nights where I didn't have anything to eat just before going to bed than the food that I had had which had been consumed four or five hours prior to going to bed, so I guess that means I have no idea, yet again, as to what the hell's going on with my body. I would much rather be in bed dreaming and resting right now than sitting here at the computer typing. Praise God for Greg Kopchinsky and his gift of dictation software to me, for with out it at this specific time, I wouldn't be able to be typing or focusing my thoughts in such a way as to be able to type.

I did have a crash this afternoon, actually this evening. Just as dinner was starting, I could tell that things were slowly headed south (as opposed to quickly), so I poured some potassium and drank that and went ahead and had dinner with my parents and family and Sean O'Brien who had come and was visiting for a good part of the day. By the end of dinner it was difficult for me to focus and so Joshy helped me walk into the house (we were eating outside). Shortly thereafter, I was in my chair and could feel all of my strength and my energy and ability to focus, ebbing away; it is in some ways, surreal to experience some of these attacks; I know they must look completely different to the person standing by and watching it. So far to date, I'm too embarrassed or vain to want to video record what I look like when the attacks happened, though I know that it could quite possibly be a very effective tool once we find a doctor who will take me on and take an interest in seeing my disease managed in a more efficient manner than just living day to day, waiting for the hits to come; in some cases literally counting the minutes before all hell would break loose.

Yesterday morning, Tuesday, I slept in fairly late but was able to get up in time to go to my 10:30 physical therapy appointment in Antelope. Things went well during the appointment, although I chose not to do any of the weights or exercises just because I wasn't feeling confident on how the rest of the day would turn out to be. Following physical therapy, my mom dropped me off at home and she left to pick up Missy from school and my dad and I got out my rifle and shotgun in prepare them for taking to the gun range in Rancho Cordova. My friend Sean O'Brien came over and he, along with my son Josh, went with us. We stayed at the range and shot for couple hours with my rifle and another .22 rifle we rented there at the range and had a pretty good time, all in all. The only exception that took place with me was that a person standing two booths to my left, shooting a higher caliber rifle, whose ejecting shells from his rifle were kicking out of the gun at a fairly good speed, (most of the time landing on top of Sean's head or my platform, or even further down away from us) came towards the end of our shooting time when the gentleman shot the target and the ejected shell flew directly towards my face and lodged its very hot metal casing in between the skin of my left eye and my glasses, so it held there for a moment until I could yank my glasses off and get the shell casing off of me. After doing so, we took a look at it and I have a couple small burns and bruises where it landed but I'm so, so very grateful that it did not actually hit my eye which was just a quarter of an inch away. That was a little scary and it definitely was a lesson as well, in that, when I go shooting the next time I will make sure that I have large piece of cardboard on my left to prevent any shells from popping over from one booth to the other.

It is now 3:08 AM and I'm going to try it back to sleep.
Today's crash is the first in the past five days, so in and of itself, that is good news according to my daily life.

It’s Been a While…

Where to begin? It’s been so long since I last posted. It kind of snowballs on itself, in that I feel frustrated and bad that I haven’t written and caught up here that I put it off, waiting in some sense to have more information to write and share, but the reality is that I should be just journaling daily and that would solve the issue. Of course, now that I think more about it and remember how I have been over the last couple weeks, I realize that I’ve had numerous hits/attacks that have interrupted all daily flow and plans, and I need to keep that in mind before I continue to rag on myself for my blogging absence. Same old, same old, I suppose.

Well, it's taken a long while for me to be able to get the new speech recognition software "Dragon NaturallySpeaking 10" installed onto this computer, because I was unfamiliar with the sound card layout of this computer; none of the plug-in locations on the sound card have any labels so it was a matter of trial and error to find out which one was the microphone input. Success. Of course, by using the recognition software, I'm likely to be much more verbose than I would be if I were just to be typing... :-)

My parents have come to visit for this week; they were in Oregon all of last week visiting a very dear friend of theirs who was celebrating her 97th birthday. On their way home to the Bay Area, they decided to come by our house and hang with us for the week. I expect that this week will be a pretty mellow week because we have no major things planned and no major accomplishments to be reached. Cc garden is doing really very well in the backyard; she planted corn, watermelon, tomatoes, squash, and pumpkins and all are growing just fine. It's the first time she's ever had a garden of any substantial nature, so she's very excited about this end we are all excited to see everything growing, to see the "fruits of our labor", so to speak. I need to post some pictures of our little garden... maybe I can get that done in my next post.

As for me and my health, over the last week or so, it seems that I've been getting between one and two days in between attacks which is better than no days in between attacks, but I sure would like to have more time than that in between the hits. Most of the time, were able to discern what the triggers have been for the attacks, but not in every case.

It’s 10:35 and I’m going to get this one posted and then see about another more complete one tomorrow.

Peace-